Bought Patient Advocacy Groups Shames Us All

New Orleans There’s nothing perfect about nonprofits, especially these days when hospitals and many others operate like the greediest corporations almost as wolves in sheep’s clothing. Nonetheless, it was shocking, even if unsurprising in the dark cynicism of our modern times, to read about a recent study by medical researchers published in the New England Journal of Medicine and reported in the New York Times exposing the deep and disturbing conflicts of interest between numerous, big time nonprofit advocacy groups for patients suffering from all kinds of maladies and their financial and governance relationships with drug and medical device companies.

The study looked at 104 of the largest nonprofit patient advocacy groups with significant budgets – over $7.5 million in annual revenues – and in the words of Dr. Ezekiel Emanuel, one of the authors from the University of Pennsylvania, they found that “nine out of ten are taking money” from the industries connected to their advocacy. In addition to finding that more than 80% of these groups take the money, the study found that 40% of them had industry executives on their governing board, and in many cases industry contributions accounted for more than “half of their annual income.”

Adding insult to injury, the study also found that many of these so-called patient advocacy groups were opaque about their finances and the scale and size of the contributions from industry sources. They could have added that all of this is in disregard of IRS 990 requirements to list top donors and amounts, and therefore should have been more specific. The study was able to determine some amounts by trolling the groups’ websites, but, geez, doesn’t the effort by the groups to conceal this already say way more than we want to know. In these cases the drug and device companies are making investments, not donations, even though they are taking the tax write-offs for their purchases, and it seems demanding a board seat in return, just like any other significant purchase they might make in their daily business. Given the silence of many of these groups on the question of soaring drug prices and devices, like the Epi-Pen scandal, it seems tragically clear that at the least many so-called patient advocacy groups have been compromised, if not bought outright. These situations seems less like partnerships, and more like takeovers.

Working with the Mental Health Consumers Action Network (MCAN) in Alaska, it’s easy for me to see firsthand how even a membership organization can be tempted to stop being transformative and become transactional in order to have the resources to work and survive. The industry always claims to want “engagement and dialogue,” but with great care and rigid accountability that can too easily be translated into compromise, consent, and silence even in situations where patients’ voices desperately need to be heard.

There are hard lessons in this. Patients’ need to be able and empowered to speak for themselves and demand care without compromise, and they need organizations that give them voice. Advocates are invaluable and mean well, but this scandal is a good reminder that they need to facilitate the ability of patients and their families to speak, and speak loudly, for themselves, rather than building plush institutional castles for themselves, while patients still suffer and die.